There are many days in your life that you will probably never remember. You know, the days that just roll by with your usual routine, where nothing out of the ordinary happens.

Then there are days you will remember for the rest of your life. That you will never forget. Couldn’t be happier days like your wedding day, the day your children are born, the day that you get your dream job, holiday days.

And then there are days you will always remember for sad reasons. Shocking days like people close to you dying, or being diagnosed with serious illness, or even world tragedies which shock you to the core.

I remember a day in July 2006 as if it were yesterday. I had been rushing around all day and everything I did was taking longer than it should have, making me later and later. I’d just been to the stables and was meant to be popping to my mum’s to walk the dogs with her, before going home to get ready for a wedding reception of a family friend. I called my mum to see if I could postpone the arrangement as I was really chasing my tail by this point. She said that was fine and she would see me at the reception.

Then my sister called. Asking if I had seen mum yet, and I explained the situation. She got really cross with me and told me that I needed to go and see my mum straight away. It didn’t matter if I was late for the reception, I needed to go. She wouldn’t tell me why. She scared me and I immediately turned the car around and headed over to mum’s.

When I got there, and explained the change of plans, she sat me down. She told me that she hadn’t wanted to tell me like this, but didn’t feel now that there was any choice. My beautiful mum sat me down and explained that her appointment with the consultant the previous day had, contrary to what she told me at the time, given her a diagnosis.

My mum had Parkinson’s Disease.

I can usually fairly succinctly describe my feelings, but what went through my head that day remains practically impossible to explain. But I’ll try.

It was shock. Mum had been struggling for some time with certain things, but we’d all thought that she was contracting arthritis like her mum had. Never did it cross my mind that she had a degenerative brain disease.

It was disbelief. My mum was, actually still is, and probably more so now, the single strongest person I know. How could this possibly happen to her?

It was fear. What shape would this evil disease take? How quickly would it take hold and how would she cope?

It was anger. This should not be happening to her.

It was disbelief. Surely we needed to get a second opinion. This must be a mistake.

It was helplessness. I would have done anything I could to take this away from her, but there was nothing whatsoever that I could do.

More than anything, it was sadness. My mummy. My lovely mummy, who had never hurt a soul, was so very poorly.

Strangely, despite remembering so many things about that afternoon so clearly, I do not recall what I said to my mum. I remember crying and hugging her tightly and not wanting to leave her ever again.

But being as lovely as she is, she was adamant that we would go to the wedding reception and we would be normal. It was for the son of her best friend and she didn’t want to ruin her evening.

So I left to put a dress on, feeling that it was wrong. So wrong to be going out and celebrating when this was happening to our family. I got back in my car and Chasing Cars by Snow Patrol came on the radio. I started to cry and then had to pull the car over as I couldn’t see for tears or breathe for wracking sobs.

I felt ashamed of myself. This was happening to my mum and she was coping so well, so why was I falling apart. I pulled myself together and got on with the evening, which I got through with a numb but heavy heart feeling as though our family was a separate entity to the rest of the people there. Like we weren’t really part of it, because we were inextricably linked by a shared searing pain.

Mum told my brother the next day and we all spent the day at her house not really knowing what to do, or to say, but knowing that we needed to be together.

I started a new job the next day, Monday. I wanted to call and explain, but my mum was adamant again that Parkinson’s would not stop anything in our lives, that we needed to carry on. The rest of my family took the day off work and went out to lunch together. Still attempting to process the disgusting news.

My mum, meanwhile, coped by being the most positive person I could imagine. “I won’t let Parky beat me,” she said bravely. “I am going to beat it and carry on enjoying my life.”

The hardest part was that she had just lost her dad earlier that year, and had just retired, ready to chill out and enjoy a quieter life. And it felt like an awful injustice that she would never get time to do that.

I think that time made our family stronger. We pulled together for mum, for each other, and each of us fell apart at different times, while the others were there to catch us and put us back together.

If I’m entirely honest. Many of those initial emotions are still there. They aren’t so raw, they aren’t so all-consuming, but they reside there and they probably will forever.

Around 127,000 people in the UK live with Parkinson’s Disease and this week is Parkinson’s Awareness Week, so if you have a spare few minutes, please do pop over to the Parkinson’s UK website, where they are doing amazing work to raise awareness, research a cure and support families dealing with this disease.

I knew nothing of this illness before my family was faced with it, but can now recognise it in so many people. Perhaps if you learn a few symptoms – it’s not just a tremor, far from it – you could see the signs and help someone in your community, in the street, or help someone you know dealing in some way with Parkinson’s and make their lives a little nicer.

I will be writing a number of posts this week to try and help raise some awareness about Parkinson’s Disease and would hugely appreciate your support in sharing the information, the experiences and making this less of a secret disease in the UK. Thank you.

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3 comments

I found you blog via the Parkinson’s UK twitter page. I’ve never really felt the need to comment on people’s posts before. However so many of the words you write I can relate too. My mum was diagnosed last year and I went through the same emotions and felt pretty useless, like you I knew nothing of the condition. But have since been understanding it, fundraising and raising awareness of the charity.
Thanks for sharing your story, it’s really helped me reading it.
Xx

Oh Clare, thank you so much for posting. I’m so very sorry to hear about your mum being diagnosed. It’s such a shock to everyone who loves the person, isn’t it. I think the important thing is to be there for your mum and to love her and support her – but I hope there are people around to love and support you too. It sounds as though you are doing amazing things in raising awareness too. And I’m glad my post has helped a little bit. Take care xx